Greetings from the President

As EURO-CIU President, I am happy these past months have been eventful as you will be able to read in the following news. We had our symposium in Helsinki in April with more than 200 participants; EURO-CIU has started to gain more recognition at European and global level with our work supporting EDF; as well as deafness in general has more visibility thanks to WHO's campaigns and the efforts #Spend2Save movement is starting to raise awareness about old age related hearing loss.

During our last General Assembly, EURO-CIU has presented for the first time EURO-CIU Annual Activities Report.

The report was a result of months of work by the Board and was well received by all EURO-CIU members who approved next year project as well as thanking the Board for their work during 2016.

If you are interested in EURO-CIU activities, position papers, etc. the report is available online in our website: click here

Message from the Editor

As always, many thanks to all who have contributed to this Newsletter. The last edition was read by almost 2,200 people in 37 different countries, so keep your articles coming!

It was good to meet so many of you at the EURO-CIU Symposium and General Assembly in April, and we offer grateful thanks to our friends from Finland for organising this event. You can read about it later in this Newsletter.

GLOBAL NEWS – World Health Organisation

(Photo: Shelly Chadha)

I am most pleased to share that a resolution on hearing loss was discussed by the 70th World Health Assembly in Geneva on 30th May. A large number of Member States and 2 NGOs, many of them speaking on behalf of multiple Member States, spoke in support of the resolution which was unanimously approved and adopted by the Assembly http://apps.who.int/gb/ebwha/pdf_files/EB139/B139_R1-en.pdf?ua=1

This resolution will provide new direction and impetus to our efforts in this field. I thank all of you for your support till now and look forward to our continued collaboration and synergistic efforts for the implementation of this resolution in coming years.

GLOBAL NEWS – World Hearing Day

On World Hearing Day 2017, 3 March, WHO drew attention to the economic impact of unaddressed hearing loss through the theme “Action for hearing loss: make a sound investment”. This week, WHO has released an activities report about it, where you can find EURO-CIU named as one of the collaborators, on page 23.

The theme for World Hearing Day 2018 is ‘Hear the Future’, which will discuss the projected rise in the prevalence of hearing loss in the coming years.

WHO estimates that lack of attention towards hearing loss poses an overall annual cost of 750 billion international dollars globally, and has a significant impact on the lives of those affected. Prevention, screening for early identification, rehabilitation through hearing devices and captioning are among the cost-effective strategies which can mitigate hearing loss and its consequences.

The report mentions activities all around the globe. EURO-CIU will continue supporting WHO working towards the same goal and hopefully helping raise awareness about hearing loss.

20 Years European Disability Forum

Nothing about us without us - Visibility of disability everywhere

2017 marks the 20th anniversary of the European Disability Forum (EDF). Founded in 1997, EDF has grown into a European disability movement with representation in all European Union (EU) Member States and beyond. EDF has been supporting persons with disabilities and their representative organisations to come together and speak with one voice. Together with our members and partners, we are fighting for a more inclusive society with equal opportunities for everyone.

EDF 20th anniversary is an opportunity to celebrate the advances of the last two decades on disability rights. Indeed, we have seen the adoption of many EU laws and policies that protect, promote and ensure the rights of persons with disabilities in areas such as passengers’ rights, structural funds, employment, web accessibility etc. The EU's ratification of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) in 2010 provided us with a strong legal framework to advocate for inclusion, accessibility, freedom of movement, independent living, active participation and other fundamental rights and freedoms.

We are looking forward to continuing working with our members and partners for an inclusive Europe where all human rights are protected and people with disabilities are included in society without discrimination.

Spend to Save: a growing movement across Europe

The Spend to Save campaign is going from strength to strength, thanks to the support of EURO-CIU! The full Spend to Save report (Europe’s growing problem) was launched in Brussels in September 2016 by The Ear Foundation with the support of EURO-CIU, EFHOH, AEA and EHIMA; and the summary report was also launched there. The message to politicians and funders is that hearing loss has a huge impact in adulthood, and is linked to depression, dementia, greater use of services and unemployment. Spending money on today’s hearing technologies changes lives, but also saves society money – SPEND TO SAVE. The summary is now available in English, Spanish and Dutch, and is currently being translated and printed in French, Swedish and Italian, with many more on the way! The plan is for all the translations to be available to all to use, so that a common message is given to all; and we will share the activities in each country for all to see. For example, in The Netherlands there have been over 5,000 downloads of the summary, and in Spain, the minister has asked to see the full report as he was so interested.

This work is very timely with the resolution of the World Hearing Organisation being passed in May at their assembly, providing impetus to the movement. Hearing Health care is now recognised as a global issue and one which should be addressed urgently.

Living with a Cochlear Implant - 11th EURO-CIU Symposium in Helsinki

Thursday evening dinner was held in restaurant Sipuli (Onion in English).

Johanna Pätzold is giving a lecture in the auditorium.

The most furriest participants of the Symposium: Mellie from MED-EL, Buddy from Advanced Bionics and Kaci from Cochlear (implant manufacturers cuddly toys).

Music session

It was fantastic to see so many of our European friends take part in the 11th EURO-CIU Symposium in Helsinki Finland on 20.-22.4.2017. Despite the rain, sleet, hail, snow and occasional sunshine that the Ukko Ylijumala (Lord of the Skies according to the Finnish epic Kalevala) greeted us during the days, we had an interesting and fruitful Symposium in the Light House of Helsinki.

The Symposium handled life with a CI from many points of view. It was organised by LapCI ry (National Association of CI Children in Finland), in cooperation with Kuuloliitto (Finnish Federation of Hard of Hearing). Over 40 talks in three different lecture halls were presented. All lectures were either in English or in Finnish. A talented group of interpreters provided simultaneous spoken and/or text-on-top translation and an induction loop was provided, to help with the accessibility for a maximum of visitors.

The salute from the Republic of Finland was brought to the Symposium by Minister of Social Affairs and Health, Ms. Pirkko MATTILA. Herself a child of deaf signing parents, she was particularly interested in the subject. Minister Mattila mentioned that a major service structure reform of social welfare and healthcare in Finland is taking place at the moment. She asked for suggestions and advice to be brought to the attention of the decision-makers at a rapid pace. This is a welcome suggestion which we will gladly follow.

All in all, the EURO-CIU Symposium in Helsinki concentrated on the issues around adult CI users. There is a well respected and useful intervention program called Satakieliohjelma (The Nightingale Program) in Finland, providing support and yearly seminars for CI children and their families. This time, we hoped to reach the adult CI users to receive beneficial information and support on their daily issues.

Underneath we invite you to read a brief summary of the conclusions in each category. If you should be more interested in the individual presentations, we ask you to turn to www.lapci.fi . We are providing you free access to the lectures of the Symposium in the length that the individual lecturers have given us permission to do so.

We hope you enjoy the show in retrospective!

Medical Research and Peer Support

There were several presentations by doctors and medical engineers about the situation of interventions in Finland (Antti Aarnisalo, Aarno Dietz, Sari Mykkänen, Ville Sivonen). In conclusion, the amount of adult CI users is rapidly growing, and more and more adults are receiving a sequential second CI. There is a growing need for adult CI peer support. Ethical issues around giving peer support were discussed both from hospital and patient perspective. We also were deeply touched by the personal stories of Niklas Wenman and Russ Palmer. The peer support in action was present in the charming performance of the girl CI-band of LapCI ry.

Language acquisition and Multilingualism

The speeches of Åsa Palviainen, Kathryn Crowe, Taina Välimaa, Ritva Takkinen, Laura Kanto and Eila Lonka showcased interesting aspects of language acquisition and multilingualism. We heard how the CI’s give a natural ease in language acquisition for children and also help adult users in regaining linguistic strength and self-esteem.

Multilingualism in all ways is shifting into a new era. Recent research is starting to reflect the new, 21st century reality. Multilingualism is no longer seen as a train of acquisition of several sequential languages but rather a prism of diverse, language-aware, simultaneous co-existence of linguistic abilities. It is becoming natural to “mix” languages by code-switching and translanguaging. Bi- or multilingualism is no longer seen as a deficiency, confusion or semi-lingualism. The world is much more hybrid and mobile today, and hearing technology is helping individuals reach new linguistic potentials.

Music and Cognitive Development

The Music Symposium consisted of both scientific lectures (Minna Huotilainen, Ritva Torppa, Valerie Looi, Johanna Pätzold, Björn Petersen, Teppo Särkämö, Tom Campbell, Suvi Pitkola and ingo Steinbach) and workshops (Resonaari, TunneMusiikki, Ulla Sergejeff, Elisa Seppänen, Russ Palmer). The workshops especially brought a lot of joy to the audience. The main focus was on brain development and how the making and listening to music has a positive effect on the brain of the CI user.

The conclusions driven from the Music and Cognitive Development are that music is for everyone p – it is a basic human right and should be supported as such for CI users. Music is beneficial for the emotional, linguistic, mathematical and general cognitive development of a person, also for autistic children. CI-users of all ages benefit from music in its many forms. It is vital that music is included in the rehabilitation process of CI users both at home and in a professional setting. It should be administered in a manner that is pleasant, motivating and age-appropriate for them.

Health Economics

In the speeches of Brian Lamb and Pekka Rissanen, it became evident that the cost of NOT providing hearing technologies is greater than the cost of providing them. Some countries are more advanced in providing latest technology to citizens, others are behind in the intervention. The provision of latest hearing help would ultimately save money overall for health, social care and welfare systems in all European countries. It is necessary to work together as a European force of influence to make this message heard in governments. Now it is time to work toward a pan-European adult hearing screening, just like the neonatal hearing screening is in place in most European countries. The campaign “Spend to Save” is a great tool for individual countries in the evidence-based advocacy work.

Design For All

We heard interesting lectures on latest technology in accessibility both in speech-to-text services, speech recognition (Päivi Rainó), movie subtitling technology (Jorma Kaarela), acoustics (Jaana Jokitulppo) and assistive listening systems (Juha Nikula). We also were learning about the use of haptices (touch messages) and how they help deaf-blind CI users (Riitta Lahtinen & Sanna Nuutinen)

Year of Celebrations

The year 2017 marks Finland’s 100th anniversary as an independent state. EURO-CIU Symposium was part of the programme for the centenary of Finland’s independence in 2017.

LapCI ry also reaches an important milestone: 18 years since the establishing of the association, we have reached adulthood! We were so proud and happy to celebrate these events together with you in the EURO-CIU Symposium. Thank you for coming to Finland, and see you in Barcelona Spain in 2018!

The 13th European Symposium on Paediatric Cochlear Implantation (ESPCI) was hosted in Lisbon in May by Professors Carlos Ribeiro and João Paco. They welcomed over 1,600 delegates to the conference with its varied scientific programme of workshops, conferences and presentations. The delegates came from all over the world, from the many disciplines related to cochlear implantation in children, to share their experiences and to learn the latest research and technologies.

The first ESPCI meeting was led by The Ear Foundation in Nottingham in 1992, and since then the biennial conference has moved around Europe. The Board consists of the former presidents; and a Round Table led by Prof Gerry O’Donoghue from the UK asked former presidents about the changes they had seen, what they had learnt and about their mistakes. He also asked what they would like on their tomb stones....!

ESPCI has grown to be a unique meeting which is truly multi-professional but with the families and young people at the heart. A Portuguese young man called Joaquim Augusto Valente Nogueira and his mother Luisa told their moving story about the impact of cochlear implantation for them and their journey to the present day where he is studying engineering at university. As ever, we learn a lot from listening to the real experience – and to the challenges to be faced and overcome. Joan Zamora, of AICE in Spain and of EURO-CIU also took the opportunity to reinforce how important the roles of the families and users are, especially in influencing policy and practice.

The next ESPCI will be in 2019 in Bucharest, and the Board decided that 2022 will be in Budapest. These meetings are sure to be of huge interest to us all.

Understanding and appreciating similarities and differences between people and countries

Practising speaking English

Future Leaders and Ambassadors for their country and cochlear implant users

We use activities to help the young people to grow in their leadership potential. To acknowledge and value the strength of similarities and differences between countries so that they will be effective and wise ambassadors for cochlear implants in the future.

5 years of data

A questionnaire was completed at the beginning and end of each residential week.

They improved their English 80%

‘I learned that I can talk English and understand English the fact that I am deaf can’t stop me’

They improved their Knowledge of the UK 75%

Knowledge of other countries 66%‘

I learned that they are different but I don’t care because everyone is nice’

‘I never thought that other countries has good equipment like we do in my country’

They improved in Social confidence and Friendship making 65%

‘It has made me feel better about my deafness and feel happy that I can hear with my implant’

‘I’m proud of being deaf. I have more self-confident to talk about my deafness after this week. If I am at home I want to show my CIs more and to wear colourful caps on it’.

‘I am not shy anymore to ask people to repeat themselves. I don’t care if they are deaf or not’.

A few teenagers rated themselves as having less knowledge at the end of the week (e.g. Knowledge of UK). This reflects a realisation of how much more there is to find out about. This is a journey in self-discovery and is an important part of knowing yourself. By attending EFW some teenagers realised how much more there was to know.

Nelson Mandela said “Learn to know yourself – to search realistically and regularly the processes of your own mind and feelings”.

During EFW the teenagers take an exciting journey in knowing themselves and knowing others. Some come to realise how much more they want to know. We aspire for this because

‘When you know yourself you are empowered

When you accept yourself you are invincible’

(Tina Lifford)

At EFW we want the young people to grow to know themselves more, to know others more, and to become the empowered, invincible leaders in their cochlear implanted communities of the future.

Plans for this year’s EFW are going really well with some new ideas and lots of fun planned. Its Sunday 23rd July – Saturday 29th July 2017. To bring a group from your country this year you need a delegation leader who can speak English well enough to be able to translate activities to your group of 4 young people aged 11-17. It’s an absolutely fantastic event which is really worth the effort and planning that goes into it. If you want any further information please contact
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as soon as possible.

Our thanks to the European Association of Cochlear Implant Users for their ongoing support of this event.

DENMARK - Decibel – The Danish patient organisation for children with hearing impairment and their families

In 1997 five families with children with CI joined forces and formed the patient organisation, Decibel. The five families wanted to establish an organisation that worked towards developing new standards and updated knowledge about paediatric CI in Denmark. Decibel has grown ever since and is today the largest organisation for families with children using all kinds of hearing technology in Denmark. Decibel has become an opinion-leading patient organisation on matters of choice of communication and language according to the values and wishes of the parents.

Research Unit

In 2013 Decibel established a research unit and finished a first project “Age equivalent language for children with hearing impairment, HI” funded by the Ministry of Social affairs. The primary aim of the project was to investigate the auditory verbal, AV, approach and its relevance in Denmark. Evaluation focused both on outcomes for children and on the parents’ evaluation. Data related to a total of 110 children, 55 children with HI and 55 children with normal hearing (NH). Twenty percent of children with HI had a diagnosed additional disability. Annual parental questionnaires and interviews covered aspects such as; the understanding of the goals and activities, the carry-over of AVT to everyday life, the reason for choosing the AV approach. Results showed that 80% of children scored at age equivalent level on receptive and active vocabulary and language understanding. Children with HI did not score significantly different to children with NH. Twelve percent of the children with additional disabilities combined their auditory skills with visually enhanced communication. Most parents (95%) chose the AV approach, because they wished for their child to develop listening and spoken language. Carry-over of activities and understanding of long and short-term goals did not present significant problems for the parents. In conclusion, this is the first documentation in Denmark, where most of the children with HI scored at age equivalent language level. Despite the intense involvement from parents required in an AV programme the parents still assessed the AV intervention as a feasible way of working with their child with HI. Project impact was high, as 3-year of AV practice to children with HI, is now on the national budget.

Future

A new project, IHEAR – In School with Hearing Impairment, started in January 2017. The vision is that no child with HI is left behind in terms of education and social well-being. Children with HI and their parents are offered three years AV education. AV education focuses on teaching listening and spoken language to children with HI in mainstream education. Individual goals for audition, language, speech and cognition will be targeted for each child and family. Parents will receive training about language and social development. Teachers will receive guidance in HI and hearing technology. This project is funded by the Innovation Fund Denmark and the Oticon Foundation and involves partnerships from Decibel, Oticon/Oticon Medical, the two paediatric CI centres and a regional communication centre.

Authors:

Lone Percy-Smith, PhD speech and language pathologist, in charge of research unit

FINLAND - Cochlear Implants and Music Perception

(Photo: Russ Palmer playing guitar)

Russ Palmer, Music Therapist, CI user

As a CI user, using two cochlear implants, I was asked to give a presentation at the EURO-CIU conference in Helsinki in April 2017 on music perception and CIs. This was a humbling experience. Many CI users have expressed an interest into how they are able to listen and enjoy music, either through listening, attending concerts, playing an instrument or learning to sing.

I was born severely deaf and have never heard normal sound. First I was using hearing aids, one at the age of 4, attending a deaf school, then at a hearing school. I had two behind the ears hearing aids from the age of 7. I had my MED-EL cochlear implants in 2004 and 2011. I am now 58 and have had a lifetime experience in using hearing aids, cochlear implants and assistive listening devices. In addition to this, I have Usher’s syndrome which affects my vision and thus, now I am practically deaf and blind, though life does become more challenging this way, but fulfilling.

My musical journey has been a long one. Since I was 10 years old, I have always played an instrument, piano, guitar, electronic organ with bass pedals, double bass to get into an orchestra and an electric bass to get into a jazz band. I have also been singing all the time, either in a choir or with a guitar on my own. Never did I think in 2004 that I would be singing and performing on stage, making my own CD (Warm Summer Days) and DVD (Musical Perception of a Deafblind Cochlear Implant User) as well! All thanks to my cochlear implants.

The process in developing one’s musicality can be done in various ways through learning to use residual hearing (useful hearing), listening to pre-recorded vocal or instrumental music, identifying lyrics and different instruments. In time, one is able to identify these more clearly. In my case, I would sing along to some of the songs I knew, karaoke style, and thereafter practice them with guitar. It is a slow process. Pitch and rhythm are probably challenging; and melody and textural qualities follow later. In addition, when I am singing with a guitar, I find the use of a brimmed hat helpful in deflecting unwanted environmental sounds.

However, it is very important to work with your audiologist to give you a music programme that filters out certain frequencies to get a “full musical stereophonic” sound. It took me two years to get back into playing the piano again due to the “honky tonk” sound quality perceived through the CIs. But believe me, it does get better in time. It is a question of perseverance and not to give up.

POLAND - 3rd International Music Festival for Children, Youths, and Adults with Hearing Disorders “Beats of Cochlea” 10-14 July 2017, Master Class

(Photo: Barbara Kaczyńska, Art Director of the Festival)

Professor Henryk Skarżyński with the team of the World Hearing Center of the Institute of Physiology and Pathology of Hearing invites your participation in the 3rd International Music Festival for Children, Youths, and Adults with Hearing Disorders “Beats of Cochlea”. This year, as part of the Festival, professional musicians from Poland and abroad will give vocal and instrumental master classes. For five days they will be sharing their experience with festival participants. Traditionally the event will end with a gala concert. Participants will present various musical pieces on which they worked during master classes.

Also there will be an opportunity to listen to unique mini concerts prepared by both participants and guest artists. The International Festival “Beats of Cochlea“ is an unprecedented musical event that found its place in the musical calendar of artistic events in Poland.

All participants will also appear on stage together. The beautiful culmination of the Festival will be the joint performance of the hymn “The World I hear” by the participants together with the soloists, choir and the orchestra.

THE NETHERLANDS – E-Health app for cochlear implant users on the way

May 2017 – OPCI - The Netherlands

Written by: Inge Doorn

Technical progress makes new developments in CI-care possible. Until now, cochlear implant users have been very dependent on their audiologist for information, counselling, rehabilitation and testing. Hardly any data is available for the users themselves, but this is about to change.

During the last three years Cochlear (Sweden and Belgium), Otoconsult (Belgium), the VU University Medical Center Amsterdam, (The Netherlands) and OPCI (CI usergroup – The Netherlands) have worked together in a European funded project (AAL – 2013-6-065). The SHiEC (Supporting Hearing in Elderly Citizens) project has an overarching goal to develop a prototype digital health platform that supports elderly users to maximally benefit from their hearing implant by:

Empowering them, i.e. by providing them with tools by which they can take care of their hearing and their hearing device themselves.

Bringing them remotely in contact with their professional care givers, i.e. the audiological staff in the specialised clinic or the ENT doctor, by means of cloud-based solutions.

To make sure a useful app was developed, OPCI was asked to bring in the users' perspective. In order to do that, OPCI carried out several tests and questionnaires in each phase of the project. Our research (questionnaire for Dutch users of a cochlear implant) showed that 79% of the users are (very) satisfied with their cochlear implant. In a one-on-one situation in a quiet room nearly all (93%) indicated that they hear fairly to very well. In all other situations, for example, a conversation with several people, a business meeting or a party, their speech understanding diminishes rapidly. There are, however, a lot of possibilities to improve their speech understanding. Using these possibilities will enable them to participate more and better in their daily life activities and will enhance their independency.

At this moment users of a cochlear implants have to find out a lot themselves, and not many people are actively looking for answers for the problems they face. Currently CI-care is organised in such a way that for all adjustments and questions, CI-users are referred back to their cochlear implant team. Hence, they do not have instant answers to their questions, as they have to make an appointment and travel back and forth to the hospital. In our research, cochlear implant users indicated that they would be interested in a website or app where they could find their own personal data and information about their specific cochlear implant.

From May 2014 till April 2017 the SHiEC project concentrated on developing tools in order to better support senior CI users. The developed prototype of the E-Health app gives the cochlear implant user information about their CI and allows them to solve small CI issues themselves, without the need of a specialised CI center. For example, they can find subtitled instruction videos about changing a battery. Also personal information about their own sound processor is given. Furthermore, the platform provides self-tests enabling elderly people to evaluate their own hearing.

The prototype has recently been evaluated by 20 cochlear implant users. Most of them found the app very motivating and were enthusiastic about it. They really appreciated the fact that they have more insight into the functionality of their device and they highly regarded the possibilities to do their hearing tests at home in their home environment. These results are more than enough reason to further develop this tool. There is no doubt that it will be available in the future, but as all these type of developments take time, we don’t expect its release in the very near future.

The headquarters of Federación AICE in Barcelona (Spain) has acquired a new portable magnetic loop. The system has improved the communication accessibility at AICE’s reception desk.

The implementation of this measure has been possible thanks to Barcelona City Council Grant offered this year 2017 to the entities that have its headquarters in the city to eliminate communication barriers.

Federación AICE is waiting to hear the verdict as to whether we are also given the possibility of acquiring within the same subsidy a 'Dragon' equipment. The program is a speech recognition software that would allow us with training, to write on screen everything that is spoken in live events and conferences, breaking even more communication barriers and help construct a more inclusive society..

Spain - Teresa Amat speaks about Spend2Save in Ramon Llull University in Barcelona

Photo: Teresa Amat, the President of EURO-CIU (on the right)

On May 26 and 27, it was celebrated in Blanquerna, at the Ramon Llull University in Barcelona, the Symposium "Age-related hearing loss, an interdisciplinary look". It was to emphasize the importance of the hearing loss of the elderly in how they can affect the person who suffers them, as well as in their social and family environment.

The view of professionals who shared round tables and exchanged opinions was not only from the medical field, but also from the audio-prosthetic, psychological and social.

Teresa Amat, president of EURO-CIU presented the European document that has been working along the lines of the World Health Organization (WHO) and we have already translated into Spanish, Spend2Save, which explains the importance of investing in the treatment of hearing loss, in the long run, saves money for society. Amat explained that not investing in auditory policies have a costs of 16.000 million euros in Spain.

UK – Adam Hodgkinson achieves Duke of Edinburgh Gold Award

(Photo: the four stages - Bronze, Silver, Gold and the presentation at Buckingham Palace)

Adam became profoundly deaf when he was eight years old in October 2004 as a result of pneumococcal meningitis; he had his first cochlear implant 8 months later and his second one just over a year later. Adam also has Juvenile idiopathic arthritis.

Adam attended mainstream school and is now in his second year at Plymouth University studying Geology. While at school and in sixth form along with his brother Josh, they have completed their Bronze, Silver and Gold Duke of Edinburgh awards. In order to achieve the Gold award, Adam had to complete a year of volunteering and he chose to do this with the Derbyshire Countryside Rangers, for the Physical part he did Rock Climbing for a year, for the skill section he did guitar (during lessons he was assessed and had to meet certain criteria), he did a Residential away from home for four nights and five days (this was also part of the criteria to gain the National Citizen Service award which Adam completed in 2015) this included having to lead a Charity fundraising event and the latter part was an expedition for four days and three nights which he did in the Snowdonia National Park where he planned routes and the goal was to explore the different Geographical features in the area.

On Wednesday 24 May 2017 Adam, along with his brother Josh, were presented with their Gold Duke of Edinburgh certificates in the gardens of Buckingham Palace in the presence of HRH the Duke of Edinburgh, and the Earl and Countess of Wessex, as well as many well known TV presenters and Sports Personalities. It was an incredible day that Adam will never forget. Adam says he would do it all over again! It is an internationally recognised award that Adam will be able to put on his CV and demonstrates commitment, resilience and determination to succeed and be an example to others of what can be achieved in life when you are determined to overcome adversity.

UK – Shazar gets a cochlear implant

Shazar has just turned 9, and he lives in London with his parents and brother.

Shazar is a fun loving active 4 year old, he is full of life and loves socialising; he can adapt to most settings and make himself feel comfortable. He shows no barriers until he uses spoken language; he laughs and jokes around so much, I often feel as though he is constantly performing on a stage!

Shazar has a mild to moderate hearing loss in the right ear and is profoundly deaf in the left. He was diagnosed at birth. Shazar had various tests done at hospitals at the age of two. Shazar wore a hearing aid on one ear for a long time, I was always concerned about his profound ear. I didn’t like the fact it was treated like a dead ear. Currently he wears hearing aids on both ears. One is a transmitter and one is a receiver and a hearing aid. It is called a Contralateral Routing of Sound (CROS) aid. This type of device transports sounds via very short distance radio waves (Bluetooth is a trademark type of radio communication) from the side with hearing the good ear which help Shazar to localise sounds better and hear from both sides.

Shazar had one ear which was profoundly deaf and not functioning at all. We were told that he was not a candidate for a cochlear implant due to his type of loss. I did discuss this with my Consultant and I urged him to support me. Since 2010 my request has been rejected. Shazar started getting lots of serious ear infections in his good ear and his good ear was deteriorating over time according to the audiogram and his response to me. I then approached Great Ormond Street Hospital (GOSH) myself and explained my child had an ear with a profound loss. GOSH is is one of the world's leading children's hospitals. I felt as a parent that I was failing him and felt that he should have a chance in life to use his profoundly deaf ear. I was stressing to the professionals that this should not be classed as a dead ear so please give him a chance to hear from this ear.

In 2016 Shazar underwent assessments at GOSH and in the same year he received a cochlear implant for his profoundly deaf ear. He has had the implant for 6 months now, and seems quite proud of it; he feels it’s an important part of his body and feels very confident with it. He’s proud to show it off and talk about it too his school and strangers when they seem interested and curious. He now can hear slight sounds and speeches.

I’m very much happier and content that we made the right decision for his future, and hope that he survives well in the classroom environment and closes the delayed learning gap.

American Cochlear Implant (ACI) Alliance (www.acialliance.org) is looking forward to our annual symposium to be held July 26-29, 2017. This year we are co-organizing the CI2017 Pediatric 15th Symposium on Cochlear Implants in Children (http://www.acialliance.org/page/CI2017) with Stanford University School of Medicine and University of California San Francisco.

The CI2017 Pediatric Symposium objective is to provide attendees with opportunities to explore current topics that have the greatest impact on improving outcomes for children with cochlear implants. There are six themes with keynote speakers and panelists addressing each theme. Additionally, podium talk speakers provide further exploration of research and clinical insights. The symposium themes are music, technology, cognition and outcomes-indications-delivery.

Keynote presentations scheduled for the meeting include:

When Should We Attempt to Preserve Residual Acoustic Hearing in Children? Bruce Gantz MD, University of Iowa

In addition to the profession learning opportunities offered at the symposium, a parent and consumer educational workshop, Cochlear Implants: The Science of Restoring Sound will be offered. This is a unique opportunity for those who are exploring cochlear implants for themselves or for family members. Topics include:

Music and Cochlear Implants

The Listening Brain: Research to Practice

Foster Resiliency from Childhood to Adulthood

The Future of Cochlear Implants

Resources:

ACI Alliance provides important resources to help expand access to cochlear implant care. We recently released a Referral Guidance for Primary Care Physicians on adult candidacy. Additional resources on pediatric habilitation following CI, steps to a cochlear implant, adult rehabilitation and CI advances are available on our website: www.acialliance.org

To learn more about ACI Alliance’s research areas and our advocacy and awareness initiatives read our latest e-magazine Calling.

As 2017 progresses we continue our outreach with the purpose of eliminating barriers to cochlear implantation by sponsoring research, driving heightened awareness and advocating for improved access to cochlear implants for patients of all ages across the US.

ADVANCED BIONICS - Stepping into a New Future with a Cochlear Implant Donation

Few months ago we told you the story of how, for the first time in the ten-year history of the Hear the World Foundation, three disadvantaged children in Panama have been supported with the donation of Advanced Bionics cochlear implants (CI). We are now happy to tell you that the dream of hearing finally came true for these children, following the successful activation of their CIs.

At activation, around six weeks after the operation, emotions were high: the eyes of Ivana (3), Jozmar (4), and Alejandro (4) started to light up. You can see in their eyes that something wonderful and fundamental has changed in their lives – they can hear properly for the first time. Indeed, it was a big day for the three children from Panama!

Just donating cochlear implants is not enough, it is important to transfer knowledge and ensure sustainability. Professional follow-up care is an equally important part of Hear the World’s engagement and support. The experts from Advanced Bionics play a major role in ongoing care: they support the project locally, control the activation of the CIs, and pass on their expertise to the audiologists of FUNPROI, the local non-profit organization supported by the Hear the World Foundation since 2013, so that children will continue to receive follow-up care in future.

Over the following two to three years, the children will receive regular audiological monitoring of the cochlear implants as well as speech training three times a week to compensate for their current speech deficiencies and to prepare them for school. Their parents are trained in how to handle CIs and also receive tips on playful ways to support their children in their speech training at home. With all of these measures, the Hear the World Foundation not only enables children to hear, but also ensures sustainable all-round audiological care in accordance with international standards.

Click here to read all the details and watch videos about our project in Panama.

ADVANCED BIONICS - Cochlear Implants and Music – Why Details Matter

(Photo: Davide Santacolomba playing the piano)

Millions of people suffer from severe to profound hearing loss. This experience changes their lives as their natural ear is no longer able to process the amazing range of sounds, and it cannot deliver vivid details anymore. For music professionals hearing loss is even more dramatic, as it prevents them from pursuing their careers, not allowing their ears to distinguish between a drum and a flute, high notes and low ones.

“Classical music is the love of my life. At one point I realized a cochlear implant was necessary if I wanted to improve my musical skills. I didn’t have to choose Advanced Bionics, my audiologist recommended it to me as the best CI on the market for music appreciation” — Davide Santacolomba, pianist, and AB recipient.

Thanks to his passion for music, the relentless study of the piano, and to Advanced Bionics HiRes technology which offers five times more sound resolution than any other cochlear implant(1), (2), Davide is now a professional musician, able to capture the full dimension of sound, and able to enjoy a more complete hearing experience. “My AB implant brought me some tangible results. When it comes to sound quality, it really makes the difference!”

Implanted in 2013, Davide is one of the many talented musicians who participated to the 2016 edition of Beats of Cochlea, the International Music Festival dedicated to musicians with hearing disorders, organized by Professor Skarżyński and the team of the World Hearing Center of the Institute of Physiology and Pathology of Hearing. Click here to watch him performing Debussy’s “Pour Le Piano: Toccata” at the final Gala Concert.

The third edition of Beats of Cochlea is taking place this summer in Warsaw, Poland (July 10-14). Advanced Bionics would like to wish all the participants the best of luck with their performances, and for them to enjoy the delight of music as amateur or professional musicians!

ADVANCED BIONICS - The Stories of Anne and Helen

Anne is a Project Manager for an Ambulance service in the United Kingdom. Helen is a PhD student at Nijmegen University in the Netherlands. Frances is an editor and actress coming from the Netherlands. Alexander is a Hearing aid professional living in Germany. What do they all have in common? They all chose the Naída Bimodal Hearing Solution from Advanced Bionics and Phonak.

The new Naída bimodal hearing solution provides the first hearing aid specifically designed to work with a cochlear implant system. It features the AB Naída CI sound processor (1) and Phonak Naída™ Link hearing aid (2).

“Before I had to switch programs on both devices. Now I can just change the program on one device, and it will communicate the changes directly to the other one” explains Helen. Because they use the same platform, the Naída devices are able to communicate with each other in a way no other hearing aid and cochlear implant combination can match.

Studies show that this gives you a proven advantage for hearing in noise and greater listening comfort compared to using a cochlear implant and any other hearing aid. (3), (4)“We decided to go to the pub to experience what the Naída Link would be like. The background noise was toned down, we were amazed” says Anne.

Click here to know more about their stories and meet other Advanced Bionics users, and learn how the Naída Bimodal Hearing Solution improves hearing in their everyday activities.

COCHLEAR - Bimodal solutions – working together for better hearing

Hearing with two ears (binaural hearing) offers a wealth of hearing benefits: better sound location, clearer understanding of speech, and the ability to hear better in noisy environments to name but a few. Harder to define, are the impacts on quality of life. People who hear clearly with both ears talk of feeling safer in the world, about how they have been able to continue working in different environments, and how their self-confidence and independence have improved. With a whole range of possibilities for binaural hearing available, it’s time to look for better solutions.

Beyond hearing aids

Many people begin treating their hearing loss by wearing two hearing aids. However, as hearing loss progresses, hearing aids alone may not be enough and, after counselling and review, they may decide to receive a hearing implant. Cochlear implants deliver direct stimulation to the hearing nerve to help people with sensorineural hearing loss. This can provide better understanding of speech and improved clarity of words and sounds, particularly in difficult or noisy places. Those with severe or profound conductive hearing loss or Single Sided Deafness may benefit from a bone anchored hearing implant, which use bone conduction to bypass a blocked or non-functioning middle or inner ear.

A more complete hearing experience

For people who still have some hearing but who cannot hear well with hearing aids alone, there can be significant benefits in wearing a hearing implant in one ear and a hearing aid in the other. This is known as a bimodal solution because it combines two different methods of hearing stimulation. The implant is used to provide sound clarity, while a hearing aid in the other ear can deliver a more complete and comfortable spatial hearing experience.

The power to choose

Cochlear and ReSound are two pioneering, global leaders in hearing solutions. They have partnered to offer the Smart Bimodal Hearing Solution, which allows users to enhance their hearing by combining the two devices that best fit their needs. Breakthrough technology SMARTstream™ combines the most advanced sound processing technologies found in ReSound hearing aids, Cochlear™ Nucleus® Implants and Cochlear™ Baha® Bone Conduction Implants to allow seamless streaming of sound to both devices at the same time.

The Smart Bimodal Hearing advantage

SMARTstream allows recipients to hear better in situations that are often particularly challenging, such as in the car, on the phone, out in the street or somewhere noisy like work or a restaurant. Recent clinical studies have shown that, using a Cochlear Nucleus Sound Processor in one ear and a ReSound hearing aid in the other ear, people noticed significant bimodal benefit, particularly when they also used one of the Cochlear™ True Wireless™ Devices to stream directly to their hearing devices. Not only did they hear better, they also described improved sound quality, more comfortable listening and improved lyric recognition with music.

It is well accepted that hearing with two ears is better than one. With each person’s needs being unique, being able to combine two technologies is a clear advantage. This innovative partnership between two technological leaders is a revolutionary step towards delivering a binaural hearing solution for everyone who needs it.

For more information regarding bimodal hearing and how Cochlear can support you, talk to your audiologist or visit www.SmartBimodal.com

COCHLEAR - João breaks free in the hearing world

Caption to photo: "Thanks to Kanso, we stopped focusing on the problems."

At the recent European Symposium on Paediatric Cochlear Implant (ESPCI 2017) in Portugal, Cochlear shared the delightful and inspiring story of João Luis from Porto. As one of the first children in Portugal to receive bilateral cochlear implants, João has recently upgraded from two Cochlear™ Nucleus® 5 to Cochlear™ Nucleus® Kanso® Sound Processors (CP950). With more and more evidence that this smallest and lightest off-the-ear sound processor provides significant benefits for children, João’s heart-warming story embraced the overarching message of Cochlear’s presentations at ESPCI – It’s time to break free!

Because he’s always on the go…

João’s mother, Alexandra Mota, describes him as a lively, mischievous child who never walks if he can run! He loves swimming and playing football so the range of magnet strengths, optional retention aids and Cochlear™ Nucleus® Aqua+ Accessory allow him to take part in the sporty, active lifestyle he enjoys.

Because he likes his independence…

Having two sound processors makes a big difference to João. He can more easily understand where sounds are coming from, which helps him navigate his world safely and with confidence. And, because the Kanso Sound Processor is such a small and simple device, he is able to activate and attach his sound processors by himself, putting him more in control. They are the first thing he reaches for in the morning and he gets really irritated if he’s not wearing them.

Because he loves learning…

The Kanso Sound Processor is compatible with the complete range of Cochlear™ True Wireless™ Devices, helping children to stay connected in every situation. At school, João’s teacher wears the Cochlear™ Wireless Mini Microphone 2 to ensure that he hears everything she says, streamed directly to his sound processor. Relaxing at home after a busy day, he can clearly understand his favourite TV programmes with friends and family using the Cochlear™ Wireless TV Streamer.

Because he’s a child!

João is very sociable. He loves spending time with other children and being around people. Since he received his cochlear implants as a baby, his speech has developed well and he plays with hearing children, completely integrated and independent in the hearing world. The discreetness of Kanso Sound Processor make his hearing implants even less obvious and he often forgets he is wearing them. His mother tells us, “We’ve stopped focussing on the problems. He can just play, learn and discover what’s around him. He’s completely at ease in the world.”

To watch the video of João’s story, click here. It is the most successful Cochlear EMEA Facebook post to date!

MED-EL calls for urgent action as first resolution on hearing loss in 22 years is adopted by the World Health Assembly in Geneva

A new resolution to tackle the devastating impact of hearing loss worldwide has been adopted by the World Health Assembly, in Geneva. Globally, 360 million people (around 5% of the world’s population) live with disabling hearing loss, yet it has consistently remained absent from the global health agenda. (1) MED-EL, a leading manufacturer of hearing implants, is now calling for urgent action to address one of the most challenging health and social concerns facing society today.

The impact of hearing loss goes far beyond limiting communication for an individual, but can affect someone’s education, livelihood, social well-being and economic independence. New research has also linked the condition to a range of other health problems, such as cognitive decline, depression and dementia – one of largest predicted health burdens of the next decade. The social and economic impact is so significant that the World Health Organization (WHO) estimates the annual cost of unaddressed hearing loss to be between US$750–790 billion globally.

However, most causes of hearing loss are avoidable and interventions that are available are both successful and cost-effective. This includes hearing aids and hearing implants, devices that can restore the sense of sound in people with even severe or profound hearing loss.

As a company that focuses on developing innovative hearing technologies, such as cochlear implants, MED-EL has been working together with all relevant stakeholders globally to ensure the availability and broad access to innovative hearing solutions.

Ingeborg Hochmair, CEO of MED-EL and co-inventor of the first micro-electronic and multi-channel cochlear implant, commented, “As a company built around the ambition to help people overcome hearing loss as a barrier to communication, I am hugely proud that we were able to contribute to this ground-breaking achievement on hearing loss. Through this and our many other awareness and access initiatives, we are demonstrating our commitment to drive global action on hearing loss worldwide.”

As a first step to driving action on the new resolution, MED-EL sponsored a roundtable, hosted by the HEARRING group, in Geneva on 23 May during the week of the World Health Assembly. Representatives of several organisations, including WHO member countries, gathered to explore further the link between a global ageing population and how to tackle the increasing prevalence of hearing loss. Attendees discussed how effective treatments for hearing loss, including hearing implants, can help keep global healthcare systems sustainable and gathered recommendations for how to improve diagnosis, treatment, rehabilitation and care for people with hearing loss globally.

For more information on MED-EL and the company’s commitment to reducing the burden of hearing loss worldwide, visit www.medel.com.

MED-EL - New products for SONNET users

MED-EL has just released some exciting products for the SONNET Audio Processor, making our users’ hearing experience better than ever before. Whether it’s wireless connectivity, flexible wearing options or trendy design covers, there’s something new for every SONNET user.

Sometimes it’s hard to catch every word, particularly in noisy environments like restaurants and parties, but with the new Roger™ 21 from Phonak, SONNET can be seamlessly connected to any Roger wireless microphone. Roger does the hard work to give our users confidence in their hearing, wherever they are.

Have the freedom to do the things you love. The new ActiveWear accessory allows just the lightweight control unit to be worn on the ear, making it ideal for both active kids and adults. For the smallest SONNET users, BabyWear enables parents to attach the entire processor to their baby’s clothes. With nothing on the ear, infants can explore the new sounds around them while SONNET stays firmly in place.

Style SONNET with the new design covers for DL-Coil. For a discreet look, the hair patterned covers blend in naturally with different hair colours. Or SONNET can stand out with an artistic design or wild animal print. There are also fun covers to unleash every child’s inner superhero or princess.

MED-EL - The latest EXPLOREMAGAZINE focuses on the ever-present phenomenon of time and how it is constantly slipping through our fingers

This May, MED-EL launched the latest issue of its flagship EXPLOREMAGAZINE, which aims to raise awareness about the importance of hearing loss through inspiring and extraordinary stories. In this edition, called EXPLORETIME, readers will discover the crucial role that time plays in our lives, and how it affects our decisions and structures our day.

EXPLORETIME features interviews with experts who provide their views on what time is, how we can make the most of it and why living in the ‘here and now’ is the key to a better quality of life. The interviews include an article with hearing implant recipient, Donn Nisja, from San Anselmo, California, USA, who shares his experience with hearing loss, and how receiving his cochlear implants so soon after losing his hearing helped to improve the surgery’s success and his journey back into the hearing world.

“The latest edition of EXPLOREMAGAZINE reflects on one of our most precious commodities, time, and explores topics ranging from the value of time through to the mystery of time travel,” said Bettina Benesch, editor-in-chief of EXPLOREMAGAZINE. “From the perspective of hearing loss, the magazine examines the role time plays in hearing implantation, including the right moment to receive an implant and how much time is needed for rehabilitation. We hope our readers enjoy their journey through time with EXPLOREMAGAZINE.”

The magazine takes a closer look at how children become familiar with time and what we, as adults, can learn from them in an interview with psychologist Dr Marc Wittmann, research fellow at the Institute of Frontier Areas in Psychology and Mental Health in Freiburg, Germany. Dr Wittmann notes that children have a much stronger awareness of the present, whereas adults need to plan ahead, which can distract from what’s happening in the moment.

Another topic tackled by EXPLORETIME is stress and the feeling many of us experience of never having enough time. Writer, Silvana Lins, goes in search of the inner calm and asks why stress is such a huge part of modern life and how we can learn to deal with it. The magazine also explores the stress those with a hearing impairment can feel while grappling with the demands of the hearing world.